A Senate inquiry into the program has also heard that care managers are overworked and distressed, while clinical assessors are quitting in frustration because their skills are no longer valued.
Older people are promised support, “abandoned to hope” and left to die before they can access Support at Home, a Senate inquiry into the program heard today.
In often emotional evidence from people with lived experience of the aged care system, the committee heard that senior public servants and ministers were refusing to acknowledge that the current aged care system was harming older people.
In other evidence today, the Community Affairs References Committee’s inquiry into Support at Home also heard that care managers were overworked and ‘extremely distressed’.
And clinical assessors were leaving the aged care industry because their skills were not valued in a process that prioritises algorithmic assessments with the Integrated Assessment Tool.
Eastern Sector Development Team regional adviser Anna Makedonskaya told the inquiry that care managers were “extremely distressed”.
“They are overworked and stretched because of [the] administrative burden,” she told the hearing,” Ms Makedonskaya said.
“The same happens with clinical assessors. I spoke to a few clinical assessors who were saying that they believe that their clinical skills are not valued.
“They’re becoming de-skilled because they’re using just a tool and not their clinical judgment, and they’re leaving the industry. And that’s a big concern.”
Occupational Therapy Australia senior policy and advocacy advisor Jonathan Alley called for closer scrutiny of the algorithmic processes underpinning the IAT.
“Just as we have a set of checks and balances and hierarchies … in the medical system, in hospital staff, all those positions are there for a reason, and they’re scrutinised.
“Human beings make mistakes, of course they do, but in those care hierarchies, human beings can mitigate those mistakes, and that’s a crucial difference with the algorithm.”
Mr Alley said one client who needs 24/7 support from multiple family members was assessed as not requiring extra funding and did not receive the same level of funding and care under Support at Home.
“There’s a major misalignment there, and that person is worse off, even if they had a previous Home Care package,” he said
The inquiry also heard from people with lived experience of Support at Home.
Peter*, who had polio as a child, described how his home had been modified to enable him to live independently, and how vastly different that was to a hospital environment.
“At home, I can open the front door remotely and exit for a bit of sun or a chat with a neighbour,” he said.
“I can turn on heaters and lights, shower seated, dry and dress myself, even pressure socks, and do up my belt.
“I’m a lucky bugger in a home built for me.
“However, a life in narrow hallways of three-point turns, reverse wheelchair opening doors … 2.7 by 3 metre bedrooms … and microwave meals is a very different life to mine.
“More so, hospital or resi care would have me lay in bed, glaring [at] unreconcilable aged care statements.
“Support at Home, inflationary pricing, cuts to care hours, unaffordable gaps in co-payments, baffling governments, administrative overkill.
“Older people go without, opt out, and die without … 4812 older Australians approved Support at Home died before receiving a single service in 24-25.
“That is a person promised support, abandoned to hope, dying every two hours.”
Peter said there were “well-intentioned people still in denial”.
“Amazingly, senior public servants and their ministers still refuse to acknowledge that the current aged care system is doing massive harm,” he said.
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Retired registered nurse and hospital manager Jenn*, who is an informal carer for her husband with dementia, urged the committee to recommend that the IAT be redesigned to support clinical judgment, not to replace it.
“[To allow] these professionals to use their clinical training and insight to add immense and irreplaceable value to the care ecosystem,” she said.
“To remember that behind every wait list is an older Australian and their carers and family struggling to hold the line.
“Older Australians are dying waiting for a system that values their dignity and practically supports their carers.”
Jenn said it was time to stop the administrative delays and excess governance that were “contributing to real harm”.
“I implore the committee to champion these urgent reforms before more time and more lives are lost to a system that is failing its fundamental purpose,” she said.
“Older Australians with complex needs like my husband do not have the luxury of time for gradual systemic transitions or software updates.
“They are declining. They are dying while waiting for a system that affords them basic human dignity, agency and affordable care.”
Retired educator Deb* who has a background in disability and learning support, told the hearing about her first-hand experience of the aged care system through caring for four older people.
“These four experiences taught me a single confronting lesson: that the system doesn’t fail in a uniform way – it fails differently for every person who needs it, and when it fails, the cost can be measured in lives,” she said.
“There remains a significant unsupported gap between the moment an older person first needs help and the moment it is delivered.”
Deb said the aged care system should be designed to be accessible, understandable and supportive for all, but the online Support at Home guide was 44 pages and 8,500 words longs.
“For many Australians, that represents close to an hour of online reading before even interpreting the unfamiliar terminology and considering decisions,” she said.
“The difficulty is not simply the length of the document. It’s the combined burden of the acronyms, the financial tables, the eligibility rules, percentage ranges, the multiple pathways, and references to still more documents and links.
“So not until page 14 is there something simple, which is flow diagram. But I want you to remember we’ve you’ve probably already lost our audience by page 14, and let’s remember that most of them don’t have a device.”
Deb said research had shown that only 28% of Australians aged 65 to 74 years had the literacy skills to understand that online document, and around 1.5 million Australian over 75 didn’t have a computer or technology skills.
“They’re the client, and we don’t know where they are. We can’t help them,” she said.
Dementia Australia advocate, former educator and manager Lynda* said algorithms could not deal with qualitative data.
“Assessor qualified judgments are now not taken into account because the algorithm can’t deal with comments,” she said.
Lynda, who was the sold unpaid carer for her partner with dementia for 15 years, now has aortic stenosis from intense and prolonged stress along with PTSD.
The IAT needs to capture pre-existing trauma and investigate complex conditions in more depth, including cognitive and psychosocial disabilities, she said.
“I’m particularly concerned to assess the impact of progressive conditions, for example, Parkinson’s, the many forms of dementia, multiple sclerosis, cerebral palsy, motor neurone disease, and other conditions where symptoms over time, often unpredictably, the effects of childhood polio, for example, often lead to debilitating changes in later life,” she said
* Only first names of people with lived experience were given at the hearing.